Monthly Archives: June 2013

Aspies are often labeled high functioning by default. Some people even seem to think it’s a compliment.

“You must be very high functioning. You don’t seem autistic.”

“Why, thank you. And you’re not especially ugly.”

Because, yeah . . . being told you’re “not that autistic” like it’s a good thing is hard to swallow.

Functioning Labels in Practice

Applying functioning labels to autistic people is problematic. Maybe an example will help illustrate why.

I’ll describe two autistic women, Mary and Joan. See if you can tell which one is high functioning and which one is low functioning:

Mary is a wife and mother. She’s been steadily employed since age 16, has a BA degree and runs her own small business. She exercises regularly and is health conscious. When her daughter was younger, she volunteered for parent committees, hosted sleepovers, coached softball and drove carpool. As the more detail-oriented spouse, Mary has always managed the family finances and investments. She has a diverse set of hobbies and pastimes that include dog training, target shooting, reading mystery novels and fiction writing.

Joan is a wife and mother too. Her marriage has been rocky at times, thanks to her undiagnosed ASD, and she has no close friends. Joan works at home, avoids speaking to people on the phone and prefers to spend most of her days alone. Joan sometimes needs to be reminded to brush her hair, shower or put on appropriate clothing before going out. She’s never negotiated a lease or car purchase by herself and has never lived on her own. She enjoys going to the zoo, vacations at Disney World, animated movies and has several stuffed animals that she likes to hug after a hard day.

Coined by Roy Baumeister, the term ego depletion simply means that we have a limited pool of energy to devote to both self-control and cognitive tasks. If we devote energy to, for example, suppressing temptation, we’ll be less willing to solve a difficult math problem or run an extra lap around the track.

Baumeister did a series of landmark experiments to prove the link between self-control and our willingness to engage in difficult cognitive tasks. He found that people who were asked to resist eating chocolate cookies and candy were quicker to give up on solving challenging puzzles than those who were allowed to indulge in the sweets.

What the heck does this have to do with autism, you ask? A lot.

The types of things Baumeister tested for are all related to executive function (EF)–our brain’s ability to regulate our cognitive processes. EF includes things like planning, problem solving, working memory, attention, and initiating, sustaining and inhibiting actions. That last part is really important–that’s where self-control enters the picture.

When we look at the tasks that Baumeister asked his subjects to do, they all call on the brain’s executive function reserves. And impaired EF is a central feature of the typical autistic brain.

What’s More Important: Quiet Hands or Long Division?

Many therapists, teachers and other professionals believe that extinguishing a child’s stimming is necessary for learning to take place. Their justification is that stimming diverts the child’s attention away from the information or task. To help the child focus, they insist on “quiet hands” or “quiet bodies.” The assumption that a child can learn better if he or she suppresses stims has been widely disputed by autistic adults and by some parents, teachers and therapists.

The obvious reason for objecting to “quiet hands”-type instruction is that it shames the child for moving in a way that is natural and comforting for them. Others have written eloquently and in great depth about this subject; I’ve linked to some key pieces below rather than repeating what has already been said.

The case I want to make against “quiet hands” is that in addition to being emotionally damaging, it’s cognitively counterproductive. Think back to the experiment where the people who were told to resist eating chocolate gave up more easily on solving puzzles. Substitute stimming for chocolate and learning long division for solving puzzles. Add in the fact that autistic people have impaired executive function to begin with, making inhibition of actions more challenging, and you can see why asking a child to resist stimming is counterproductive if you’d also like them to learn a new skill.

An Illustration (or Let’s Pretend EF is Something We Can See)

To help us think about executive function in concrete terms, imagine two children in the same math class. Since we can’t actually see or measure EF in a simple way, let’s use imaginary EF “units” to talk about typical versus impaired executive function.

The typical child has 100 units of EF available for math class. The child with ASD has impaired EF, meaning s/he begins the math lesson with 70 units of EF.

Assume the typical child has to exert some self-discipline to attend to the math lesson: 20 EF units, which are devoted to things like staying seated, paying attention, and not talking to classmates. That leaves 80 units that can be devoted to learning math.

Assume the autistic child has to devote twice as much EF (40 units) to self-discipline. Not only does s/he have to do all of the things the typical child is doing (staying seated, paying attention, not talking to classmates), s/he has to inhibit the natural urge to stim. That means s/he is starting out with less EF and devoting more of that small reserve to self-discipline.

Look at the amount of EF each child has left for doing their math work. The autistic child starts off at a disadvantage and is further disadvantaged by a classroom rule that has supposedly been put in place to help him or her.

A Brief Clarification

Before you say, “but how can s/he learn math while spinning around/headbanging/bouncing up and down” let’s clarify what stimming is. Yes, sometimes stimming is all of those things, but it is also fidgeting with a toy, chewing on a chewy, bouncing a leg/foot, flapping a hand, flexing fingers, rocking gently, moving around on an exercise ball used as a chair, or any number of other things that can be done while sitting at a desk.

In fact, every time I stop typing to think of what I want to say next, I start rhythmically tapping my fingers in sequence on my keyboard. That’s stimming. I don’t think about it. I don’t do it on purpose. It isn’t a “behavior.” It happens naturally. It helps me organize my thoughts and stay on task.

It’s the opposite of a distraction.

The Cost of Inhibition

So when I say that a child should be allowed to stim and that stimming is more likely to be cognitively beneficial than distracting, that’s the kind of stimming I’m talking about. Note that in my example, the autistic child was expected to do the things the other typical children were expected to do, such as sitting in their seat and not talking to classmates. They aren’t being allowed to do “whatever they want”–an assumption some people will jump to when anyone raises the notion that autistic children should be allowed to stim.

Maybe while they’re sitting in their seat and working on their math problems, they’re also manipulating a piece of string or a fidget toy with one hand. Maybe they’re sitting on an exercise ball so they can gently roll from side to side. Maybe when they pause to think they flap their hands.

Imagine the red self-discipline portion of the graph shrinking for these kids when they’re allowed to stim while they work. When that happens, the green “solving math problems” portion can grow. When they no longer have to spend EF resources on not stimming, those resources can be repurposed for learning.

If you find it hard to imagine how difficult it is to inhibit stimming for an extended period of time, try this: imagine you have a bad case of poison ivy, you’re not allowed to put any medication on it or to scratch where it itches . . . and I’m going to teach you how to find the limit of a function as x approaches a fixed constant.

How much of that math lesson do you think you’ll retain? Would you even care?

A Few Words About Socially Acceptable Behavior

There is another argument against stimming at school or in other public places: we need to teach autistic kids socially acceptable behavior so other kids/people don’t think they’re weird. Well, I have two things to say about that.

Yes, autistic children should be taught the same social rules as typical children. They should be taught to respect others and all of the rules of politeness and civility that go along with it. But here’s the thing: I was an autistic kid and I can tell you for certain, stimming or not, the other kids already think we’re weird.

Instead of insisting that autistic children adopt unnatural behaviors for the sake of social acceptance, how about working toward changing what is socially acceptable?

**** I’ve used children as an example throughout this piece, but everything here applies to autistic adults as well.

I’ve seen it used to describe autistic behavior in the context of “nonfunctional routines” and “nonfunctional play.”

Raise your hand if you think your routines are “nonfunctional.” I will happily concede that my routines are inflexible and specific, even weird and inexplicable at times, but nonfunctional? No way.

My routines have purpose. Without them, I risk becoming paralyzed or adrift. My carefully organized life goes all to hell. The plants don’t get watered. The dog may or may not get fed. I forget to shower. I get anxious about what’s for lunch before I’ve even finished breakfast. I spend too many hours happily chasing after this idea or that, forgetting that the rest of the world exists.

In the absence of routines, I just plain forget to do things. I drift. I perseverate and spend way too much energy on the blizzard of little choices that typical people find effortless and aspies find exhausting, never getting around to the more important stuff. I become all details and no big picture.

Take breakfast, for example. I find it fascinating that some people (a lot people?) wake up not knowing what they’ll have for breakfast. Presumably they walk into the kitchen or the diner or 7-11 and just decide on the spot what they’d like. This is an amazing feat of executive function and one that I would find stressful beyond words.

I eat the same thing for breakfast everyday. It frees me from having to think about what I’m in the mood for in the context of what we have in the house, the comparative calories and nutritional value of my choices, how much time it would to prepare each choice, the possibility that I’ve left some better choice off my list not to mention the fact that I’d have to shop for these choices at some point, thereby having to choose not once but twice.

Instead, I grab a bowl, slice up some fruit, dump in my favorite cereal and pour milk over it. It’s simple and it makes me happy and I don’t have to use up precious brain resources before the sun is barely over the horizon. That seems pretty damn functional to me.

Routines give my life structure. Within my routine, I always know what I need to do next or I at least have a limited number of “preprogrammed choices” to pick from. While this doesn’t entirely prevent unwanted surprises, it reduces them to a tolerable level.

If you’re not thinking “yes, exactly!” at this point, you’re probably thinking I’m the most boring rigid monotonous person in the history of humankind.

Fear not, I can be flexible if I have to. Let’s stay with the breakfast example. There are times when breakfast at home isn’t an option. Vacations. Special occasions. Power outages. This used to upset me, but I’ve learned that being grumpy at breakfast when there are so many delicious things to choose from is not only an example of a nonfunctional attachment to routine but a real drag.

At first I had to do the adult equivalent of a social story: Sometimes the restaurant doesn’t have the food I want to eat. That’s okay. There are a lot of other foods on the menu that I can try. Many of them are probably things that I would enjoy.

(That doesn’t look like me at all but I have zero drawing skills so I had to rely on the stock characters at Pixton for an assist)

Yes, I felt a bit odd having to repeat this to myself, but over time it worked.

Which isn’t to say that I’m routine-free on these magical breakfasts away from home. I can be happy with coffee if the restaurant doesn’t have chai. I can enjoy French toast as much as an egg sandwich or a bowl of oatmeal.

You won’t catch me spontaneously ordering a mango smoothie or freestyling my way through the make-your-own-omelet choices. I still have a routine for breakfast; it’s just different.

I’ve discovered that it’s not routines themselves that are problematic, it’s the appropriateness of the routine I choose to run. At home, I need to run the home breakfast routine; when I’m out, I need to run the restaurant breakfast routine. The restaurant breakfast routine has more options. It’s not one that I’d want to run everyday, but I can do it as needed without the kind of negative consequences I’d face if I had no routine at all.

What does no routine at all look like?

The Scientist and I went to a new lunch place last week. First of all, it was one of his totally unplanned let’s be spontaneous adventures so I was already a bit flustered by the last-minuteness of it all. The menu was blessedly limited, except for the all-day breakfast option, which I considered then eliminated on principle, although I’m still wondering even as I type this if I should have factored the breakfast items into my decision.

Anyhow, I ended up choosing a grilled ham and cheese but not before I’d analyzed the pros and cons of everything on the menu that I’d even remotely consider eating. I cycled through a half-dozen choices before settling on the ham and cheese, mostly because that was the choice I was thinking about when the waitress appeared in front of me. If she’d arrived a minute earlier, I would have had a BLT. Before that I was settled on a burger. Thirty seconds later and I might have ended up with ham and egg sandwich.

I have no idea how long I would sit there looking at the menu if I wasn’t forced by circumstances to make a final decision. Ten minutes? A half hour? Indefinitely?

Choosing what to eat at a new restaurant probably sounds trivial to anyone who is running at full executive function capacity. For those of us who have impaired EF, every single one of these decisions uses up resources that could be better spent on important stuff like being productive at work, home or school.

Routines may look nonfunctional and even limiting, but they’re often just the opposite. They allow me to spend less time sweating the small stuff, freeing up my brain for the more important aspects of adulting.

Thank you to everyone who helped me refine the cover art last week and cheered me on. That last mile was more difficult than I anticipated. Now I need to do some promotion so I can get my giveaway idea off the ground. Strangely, I’m really good at promoting other people’s stuff and am probably going to be terrible at promoting my own.

Another Adult ASD Research Study

This week, I received information on two more research studies. If you live to fill out questionnaires, are over 18 and have an ASD diagnosis, read on. Both studies are by being conducted by Kathrine Birt as part of her Doctoral research at Deakin University in Australia. The goal of the studies is to better understand the impact of Autism Spectrum Disorder (ASD) diagnoses on intimate couple relationship development (in adulthood).

The first is a questionnaire that takes about 20 minutes to complete. To participate, you need to be over 18 and have an ASD diagnosis. You don’t need to currently be in a relationship to be eligible, but if you are in a relationship, you’ll be presented with additional and more detailed questions. (I’ve completed both questionnaires, because I like to be sure I know what I’m sharing information about.) More info about the first study is here.

Study number 2 is for adults with ASD and their intimate partners. Both partners must be over 18 and one must have an ASD diagnosis. The questionnaire for the individual with ASD takes about 30 minutes to complete. After completion, a link is provided for a second (10-15 minute) questionnaire to be completed by that person’s partner. More information about study #2 is here.

Note that for both studies, clicking the “continue to study” button on the first page takes you to a second page with more details about things like the type of information collected, how the information will be used and privacy protections.

Not Quite a Hippity Hop

This is my new exercise ball:

I’ve been using the exercise ball at the gym after my twice-a-week workouts and decided I needed one at home. It’s a fun sensory toy and a good way to stretch and release the tension that I seem to perpetually carry in my upper back and shoulders. Once, a yoga instructor who told me that I carry my negative emotions between my shoulder blades. My slightly less interesting explanation is that I unconsciously put myself in awkward postures that create tension in my body, maybe as a kind of stim. The exercise ball is a good way to consciously check in with my muscles and release the tension so it doesn’t build up into nagging injuries.

Sadly, it doesn’t have a handle so I can’t hop around the living room on it.

Some Girl Stuff

Last week Asparagus Girl wrote a blog post about perimenopause and Asperger’s. Not much has been written about menopause by women on the spectrum so I was excited to see her tackling the subject. The post mainly focuses on mood swings, which should be called mood slingshots or mood boomerangs or something more violent and dangerous and in line with reality.Think PMS on steroids.

I’ve noticed an uptick in meltdowns over the last few years as my hormones become more wacky. I’m definitely more irritable, too, and sometimes I find myself in a strange, unpleasant moods for no obvious reason. There’s other stuff–some that’s TMI even for me–and taken together all of these changes have me wondering if women on the spectrum experience perimenopause differently from typical women. Not necessarily if we have worse symptoms, but if our funky brain wiring creates unexpected side effects of the hormone fluctuations that precede menopause.

Predictably, this isn’t any substantial research on autism and menopause. Like a lot of aspects of being an autistic adult, I’m finding the best source of information is other women who are going through or have done through the process already.

Recently The Scientist said, “I’m concerned that your world is shrinking.”

I asked him why. He elaborated. I didn’t say anything substantial in response because, as so often happens, I didn’t have a coherent answer at the time.

But that statement has been roaming my brain for the past few days, measuring my current state of affairs against times past.

Shrinking implies something that was once larger or more abundant. Two years ago I was finishing up my long-put-off university degree. I was spending three days a week on campus, surrounded by people, interacting all day, commuting an hour each way, expanding my intellectual horizons. The Scientist and I also had frequent social engagements because we lived in an area where we knew quite a few people.

Since then? I’m back to working at home. My days have a predictable rhythm: wake up, workout, write, work, eat a few times in between. Some days the car never leaves the garage. The geography of my social interaction is smaller than it was when I was going to school. Or years before that, when I was working at a job that required interacting face-to-face with people all day long or when my daughter was in school and I had to shuttle her to events and such.

There was a time in between all those other times–a time when you could say that my world shrunk very small–and I found the kind of internal quiet that I hadn’t known existed. The Scientist and I moved far away from our roots, to the desert, to a place so remote that we regularly encountered coyotes on our evening walks and the nearest gas station–the nearest anything–was a fifteen minute drive.

In that place, I found a deep internal sense of quiet. I let go of a lot of old hurts. I started to understand myself.

Of course, life gradually crept in again. We formed ties. We put down new roots. I decided to go back to school. Gradually I began to feel a creeping sense of unease. The quiet I’d found receded as I found myself having to back out of that peaceful place I’d created for myself. One by one, I backed out of the rooms in my mind, turned off the lights and closed the doors, shutting away the parts of myself that I instinctively sensed wouldn’t survive being exposed to the outside world.

Until something inside me rebelled and refused to close another door. The place I’d found–it was hard to leave and harder to close away without knowing if I’d be able to find my way back. In retrospect, that internal rebellion–the tension that arose between the security of the peaceful place I’d found and the stimulation of the outside world I was being drawn back into–was the first step toward discovering that I’m autistic.

I didn’t know that then. All I knew was that something had to give.

The tension grew in a way it hadn’t before. I became acutely aware of the two very different places I lived in. There was this new place, which existed mostly when I was alone, that felt very natural. It was secure and comfortable and, most of all, quiet. I hadn’t been in a place that internally quiet in a very long time, certainly not since I’d reached an age that had two digits in it instead of one.

Then there was the other place, the one I’d taken for granted as being life, the one where I kept a stranglehold on everything to keep it from flying apart. It was a place that pushed me to grow and expand myself, but one where I lacked the natural ease I felt in the new place I’d discovered.

I tried shifting between the two places but that turns out to be impossible for me. In typical aspie fashion, I have no idea where the middle ground is. I can be here or there, but commuting between them isn’t something I can do on a daily basis. When I do shift–like I did after my recent trip, moving from the intense interaction of being with people 24/7 for 10 days to the quiet of home–it can take me weeks to rediscover my equilibrium.

That got me thinking about where the source of that equilibrium lies. I think it lies in my true self, the one that is more fragile than I’d like to admit and that I can close off inside a nice safe cocoon when I need to, safe from harm but inaccessible.

It’s scary to realize that I can intentionally dissociate myself, scarier even to think that for years I’d been doing exactly that without consciously being aware of it. At some point–probably very early on–closing off parts of myself became my main defense mechanism, a way to survive in a world I find hard to navigate and harder to understand.

That can’t be healthy. I don’t enjoy it. I wish my quiet self was strong enough to go into the world without having to close all those doors. Perhaps the place I’m in now, this revival of my quiet period as I’m starting to think of it, is my way of nurturing and fortifying my quiet self for whatever comes next.

On my trip, I felt like I had to close off myself less than I did in the past. There are some doors I can leave ajar, some lights that I can dim instead of extinguishing. Thanks to understanding my autistic brain better, I have coping mechanisms available to me now that I didn’t before.

It may be a few years before life shifts again and takes me into a new phase as it inevitably does. For now, I’m planning to make the most of this quiet period, writing and thinking and being with myself. I think a certain amount of withdrawal from the world–a redirection of my resources–is necessary for me to expand myself internally.

Is my world shrinking?

Days later I let The Scientist know that I’d found my answer. What may appear from the outside to be smaller is on the whole simply changing shape. Again.

Yale Autism Seminar Video Series

I’ve been watching the Yale Autism Seminar video series (available free from iTunesU). It’s advertised as the only autism-specific college course and is basically a chance for you to sit in on the lecture portion of the course as it was given at Yale a couple of years ago. The videos cover a wide range of topics, with a strong focus on childhood autism. Each video is a 60-90 minute lecture on a single topic. A few of the lecturers include videos or other visual media to illustrate key points, but generally think “text-heavy Powerpoint presentation” for the lecture format.

Because each topic is covered by a different specialist, the quality of the lectures varies. I especially liked “Communication in Autism” by Dr. Rhea Paul. It was packed with information about how children develop language from birth through adolescence. I’ve also enjoyed Dr. Ami Klin’s presentations.

Be forewarned that there is triggery content in most episodes–not so much the factual information but the language that many of the lecturers use and sometimes their attitudes toward autistic people. I consider myself pretty resilient to triggery content but I can’t watch more than one (and sometimes only half) every few days. It’s eye-opening to see how professionals who work with autistic people view autistic people.

Not Very Neanderthal

Back in March I spit in a little tube and sent it off to 23andme to get my DNA genotyped. Last week, I finally received the results. The biggest surprise is that my body doesn’t make the lactase enzyme. I guess I’m lactose intolerant but didn’t know it? My 40s are turning out to be a banner decade for stuff like that. I also have an elevated risk for Type II diabetes. That’s good to know, because I can actually do something about it. Not so much on the elevated risk of Alzheimer’s or restless leg syndrome.

There are some fun facts among the results: I can blame my higher than average caffeine consumption on my genes and I have a significantly lower than average percentage of Neanderthal DNA (in the 8th percentile). I never put much stock in the aspie-Neanderthal theory, but I gotta admit I was curious.

I Made a Thing

I’ve been putting my Adult ASD Diagnosis series together into e-book format. This is what I have for a cover design at the moment. Yeah? No?

I’ve added about 5,000 words to what’s been posted here on the website: primarily background material about ASD and the DSM-V criteria plus a big list of questions I developed to help people identify autistic traits in themselves. My main goal in making it into an e-book is reaching a wider audience. When I first went looking for information about ASD, I went to Amazon.com and did some web searches. Neither of those was very helpful. Unfortunately, I didn’t discover the blogs of autistic adults until later.

The material that’s posted on the blog will stay, so no worries about anything disappearing. I’m also hoping that I can use the proceeds from the book to do some giveaways here. I thought about donating to an autism-related charity but then I thought “hey, I know plenty of autistic people!” and wouldn’t it be better to do a giveaway of something like a weighted blanket to an autistic person who will directly benefit from it. I have no idea how this is going to work, but that’s my dream outcome.

ETA: I accidentally fell way behind on bringing over the survey replies from Survey Monkey for the final survey ! Executive Function fail. I’m so sorry and am in the process of getting caught up. There are about 20 additional responses that I will post this morning.

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.